Brielle and I went to a special needs agency fair today sponsored by our local school district. Even though we homeschoool, I learned about the fair through a social networking site. It was quite an overwhelming experience.
There were booths with about 40 local agencies that serve the community in a variety of ways. Everything from organizations that provide recreational experiences and educational needs to living arrangements and legal services.
The booths that focused on special needs adults in our community were quite the eye opener.Some were great to see -- activities, work opportunities, continuing education, active day care, and group homes. However, it was sad to know that so many of those have long waiting lists, especially the group homes.
There was a booth representing the Social Security administration. Although Brielle cannot currently qualify for funding from SSI due to our family's income, it's something we'll definitely need to look into as she approaches her 18th birthday.
Another booth was a legal service that helps families obtain guardianship over their special needs children turning 18. I learned it costs approximately $700 to achieve guardianship between the lawyers fees and legal fees. How can some families afford that?
I knew obtaining guardianship over Brielle was something we would need to do, but hearing about the ins and outs of getting it done and consequences was a bit unnerving. I learned that when guardianship is achieved, it takes away many rights of the special needs person. I realize it's there to help families whose adult children cannot make financial, legal and health care decisions. However, I also learned the person would never have the right to vote, sign a contract (even a cell phone contract), or get married. That last one rattled me.
Will Brielle ever find someone special, fall in love and want to get married? I hope so. But, in some ways it is very difficult to imagine. It was sad to think about her right to marry being taken away when we assume guardianship over her.
There was a guest speaker, a parent liaison sort of person, who talked about empowering your children and preparing them for their future. Nothing too new for me, but lots of good reminders that I needed.
Part of her talk was about how laws have changed over the years. I know about ADA, IDEA and some other laws that have acronyms. However, I never gave much thought to how it all started and what parents of special needs children went through to make those laws a reality and make the lives of our children a different reality than what was in the past. Got me really thinking.
We came home with a bag full of fliers and brochures. All of that "light reading" will have to wait for a day when I have the time and can muster up the positive energy to go through it. For today, I walked away feeling very grateful for the organizations in our community and for the parents who went before us and made a difference in our culture for people like Brielle.